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Upper abdominal pain, lymphangiectasia?

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Sandy39
Sandy39

my son has been pretty much bedridden with upper abdominal pain and a lot of other random symptoms such as heat intolerance, leg weakness, fatigue to the point where he can barely move, lesions on his scalp and a whole lot of other random symptoms for over 3 years.

He had a capsule endoscopy which revealed intestinal lymphangiectasia. we were sent the results through the post but have had no contact with a doctor, as his consultant discharged him and didnt even explain the results. Google searches are saying it could be primary or secondary. Does anyone have any experience of this? His referral to see a consultant has just been rejected, so we're really at a loss as to where to go from here?????

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